Advocate for Yourself With AS

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[MUSIC PLAYING]
Helgi
When I was 19, I remember specifically having a lot of trouble getting out of bed. It was definitely a strange feeling every morning not knowing why my bones felt like they were rubbing together.

When I got diagnosed with ankylosing spondylitis, I didn't know what was going to happen to my life. But I had a very good rheumatologist, and he put me on a path to being successful with my condition.

[MUSIC PLAYING] Triple Crown 2020, 2,858.33 miles, benefiting the Spondylitis Association of America, promoting research for arthritis, and helping patients get access to medications and things like that.

I use endurance sports to manage my pain and raise awareness of AS.

By the time I was 25, 26, I decided that I wanted to do an Ironman and a marathon and all these things. And I could help people with AS.

I realized that I was one of the lucky ones who had early diagnosis. If you don't get an early diagnosis, then the disease could be progressing while you could be doing something about it. I feel that early diagnosis is the biggest thing, which is why I became an advocate.

The way that I've used endurance sports as a vehicle for raising awareness is by going to a location where there might be a great race that I'd like to do and seeing if I can do some sort of an awareness project or raise money for an arthritis charity.

I connect with people who have AS from all over the world. When I was in the UK, I cycled for 1,000 miles and stopped at some hospitals and invited people who have AS to hear me speak about it and potentially help them get inspired to be the next person to sign up for a race.

I've used social media quite a bit to reach out to people and for a way for people to reach out to me asking questions about endurance, sports, and exercising and what they should or shouldn't do.

Obviously, I'm not a doctor, but I've been a positive case for using exercise as medicine to treat my ankylosing spondylitis.

In regard to AS management, number one, have a good support system. Always listen to your doctor. Be in the know. Do some research. Figure out what other people are doing.

Maintain an active lifestyle. It's very important to stay mobile, stay fluid, do some kind of stretching every single day. Maintaining a positive attitude is very important. If you think that this thing is going to win, it will. But if you don't let it win, you can beat it, or you can at least manage it and not let it get any worse.

I consider my AS a blessing and not a curse because I feel that I've gained power from this condition.

If I can help people get fit and understand that life isn't over and there's things that they can do about their condition, that they have the ability to succeed, whatever that means for them, then I'm doing good things. [MUSIC PLAYING]